ISSN 2526-8910 Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 https://doi.org/10.4322/2526-8910.ctoAO1153

Schizophrenia, instrumental activities of daily living and : a qualitative multidimensional approach1 Original Article Mônica Macedoa, António Marquesb, Cristina Queirósc, Milton Carlos Mariottia

aDepartamento de Terapia Ocupacional, Universidade Federal do Paraná – UFPR, Curitiba, PR, Brasil. bEscola Superior de Tecnologia em Saúde, Instituto Politécnico do Porto, Porto, Portugal. cUniversidade do Porto, Porto, Portugal.

Abstract: Introduction: People with often present difficulties in social and occupational reintegration that may be associated with problems in performing daily activities. Executive dysfunction is one of the factors associated to these difficulties. Objective: In this study we sought to know and analyze the potentialities and difficulties of people with schizophrenia regarding the Instrumental Activities of Daily Living, specifically the components related to executive dysfunction through the perception of people with schizophrenia, family members and professionals who participate in support associations in Brazil and In Portugal. Method: Data was obtained through 2 focus groups for each representation (users, family and professionals), with a mean of 6.7 participants per group (N=40). Data were analyzed through Interpretive Phenomenological Analysis. Results: We identified three main themes and their respective subtopics: The to (not) do in its essence - lack of meaning, dissatisfaction and lack of autonomy; Impediments - decreased volition, inflexibility and action and difficulty in routines and tasks; Environmental factors - family, association and professionals. Conclusion: We conclude that the insufficiency in the occupational performance of people with schizophrenia in relation to IADL, directly related to executive dysfunction, reveals the importance of specific rehabilitation programs for this population, aiming at cognitive and occupational improvements. Keywords: Schizophrenia, Executive Function, Daily Activities.

Esquizofrenia, atividades instrumentais de vida diária e funções executivas: uma abordagem qualitativa

Resumo: Introdução: Pessoas com esquizofrenia frequentemente apresentam dificuldades na reinserção social e ocupacional, as quais podem estar associadas a problemas na realização das atividades cotidianas. A disfunção executiva é um dos fatores que têm sido relacionados a essas dificuldades. Objetivo: Conhecer e analisar as potencialidades e dificuldades de pessoas com esquizofrenia frente às Atividades Instrumentais da Vida Diária, especificamente os componentes relacionados à disfunção executiva. Método: Participaram da pesquisa pessoas com esquizofrenia, familiares e profissionais inseridos em associações de apoio no Brasil e em Portugal. Para a obtenção dos dados, foram realizados dois grupos focais para cada grupo (usuários, familiares e profissionais), com média de 6,7 participantes (N=40). Os dados foram analisados através da Análise Fenomenológica Interpretativa. Resultados: Foram identificados três temas principais e seus respectivos subtemas: O (não) fazer na sua essência – falta de significado, insatisfação e falta de autonomia; Impedimentos – diminuição da volição, inflexibilidade de ação e dificuldade de planejar rotinas e tarefas; Fatores Ambientais – família, associação e profissionais. Conclusão: A insuficiência no desempenho ocupacional das pessoas com esquizofrenia que participaram deste estudo, relativamente

Corresponding author: Mônica Macedo, Universidade Federal do Paraná, Rua Desembargador Motta, 345/02, CEP 80430-200, Curitiba, PR, Brasil, e-mail: [email protected] Received on May 4, 2017; 1st Revision on Sep. 6, 2017; Accepted on Mar. 20, 2018.

This is an Open Access article distributed under the terms of the licençaCreative Creative Commons Commons Attribution Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. 288 Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach

às Atividades Instrumentais da Vida Diária, está diretamente relacionada aos componentes da disfunção executiva e revela a importância de programas de reabilitação específicos para essa população, visando a melhorias cognitivas e ocupacionais. Palavras-chave: Esquizofrenia, Função Executiva, Atividades Cotidianas.

1 Introduction deficits in people with schizophrenia at home and in the community as well as interfering in the Several interventions have been proposed under achievement of positive results in the processes of social the aegis of the Psychosocial Rehabilitation, which reintegration (BARCH; CEASER, 2012; BAUM; advocates the transformation of the healthcare KATZ, 2010; CLARK; WARMAN; LYSAKER, 2010; services and society, proposing the facilitation GREENWOOD et al., 2008; HADAS‑LIDOR et al., of the functioning of individuals through the 2001; KLUWE-SCHIAVON et al., 2013; LYSAKER; minimization of disabilities and disadvantages of WHITNEY; DAVIS, 2006; SETER et al., 2011). people with mental disorders. One of the precepts The Executive Functions (EF) are flexible and adaptive of the Psychosocial Rehabilitation is that the service behavior actions in the individual´s interaction with spaces enable to construct or reinvent everyday life the world, in an intentional way. This set of skills through interdisciplinary​ dialogues and intersectoral allows planning, monitoring behavior, directing and actions, involving professionals, family members, sustaining in a task (LAWS et al., 2008). and users, proposing the de-stigmatization and the Lezak et al. (2004) define executive functioning through education of society (AMORIM; OTANI, 2015; four basic components: a) volition, which involves HIRDES; KANTORSKI, 2004). aptitudes, ​as in formulating goals, ​the intention, The participation in socio-representative associations motivation and self-awareness; b) planning, which is has been a locus for the development of skills and the capacity for conceptual formation, abstraction, abilities of people with mental disorders. It allows the creating of alternatives for action, formulating the sharing of individual learning and the construction steps and sequencing of an activity; c) intentional of theoretical structures that support and refer to the action, which encompasses the skills necessary associated group. According to Rodrigues, Brognoli, to transpose an intention or plan of a productive and Spricigo (2006, p. 242), this associative experience activity into an action; d) effective performance, enables an interpretation of reality that “organizes which includes capacities, such as self-monitoring, the relationships of the individual with the world self-direction, self-regulation, relative​ to intensity,​ and guides their conduct and behavior in the social rhythm and other qualitative aspects of the action. environment”. Also, according to Nicolau (2015, The advancement of research in schizophrenia has p. 267), teamwork “enhances transformations in led to effective treatment approaches in reducing the daily activities and in the ways people interrelate.” positive symptoms of the disease. However, there In our professional practice as occupational are still limitations to performing complex tasks, therapists both in Brazil and in Portugal, we noticed such as the Instrumental Activities of Daily Life that people with mental disorders, especially people (IADL), which are activities guided to interact with with schizophrenia, have limitations in the execution the environment, support daily life at home and in of daily actions, necessary for work, engagement and the community, as well as confer autonomy on the social participation, corroborating with the findings performance of occupational roles in the social context of Katz et al. (2007), Monteiro e Louzã (2007) e in which individuals are inserted (AMERICAN..., Ricci e Leal (2016). The need to understand these 2015; LIPSKAYA; JARUS; KOTLER, 2011). limitations is justified by the understanding that Performing IADL usually requires the handling man and social contexts are related, constituting of instruments or tools, requiring skills such as the individual and society, dialogically, through planning, self-monitoring, and problem-solving human action/activity on nature (SIRGADO, 2000; skills. However, factors impairing the performance VIGOTSKI, 2000; ZANELLA, 2004; TOASSA, of people with schizophrenia in IADL are still poorly 2016). Thus, we understand that it is probably understood (LIPSKAYA; JARUS; KOTLER, 2011; in this dialogue that the tasks are signified and NAKANISHI et al., 2007), and it is necessary to organized in families, in communities, in territories, explore how these occupational dysfunctions are including the (re) insertion, or not, of individuals related to deficits in executive functions. with occupational limitations. Thus, the objective of this study was to know Studies have reported that executive dysfunction and analyze the potentialities and difficulties of is one of the factors that influence occupational people with schizophrenia in relation to IADL,

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 Macedo, M. et al. 289 specifically, the components related to executive Ethics Committee of the Health Sector of the dysfunction through the perception of people with Federal University of Paraná. All selected members schizophrenia, family members, and professionals participated in the study after agreeing, reading and who participate in associations to support individuals signing the Informed Consent Term. and families with mental disorders. Focal Groups were conducted to learn the performance of people with schizophrenia in the 2 Method IADL. This is a methodological procedure that offers a way to generate data from the qualitative This study was carried out with the participation of people from the Arnaldo Gilberti Association interaction, exploring different conceptions about a (Brazil) and the Nova Aurora Association (Portugal), topic. In this context, the participants express and partners of the Federal University of Paraná (Brazil) clarify their points of view on the proposed theme and the University of Porto (Portugal) respectively, (MAZZA; MELO; CHIESA, 2009). The focus in several actions (curricular internship, extension on ​the ​subjective aspects of ​the participant’s projects and research) coordinated by the authors. narratives allowed to highlight the understanding The first one presentsas ​ its mission the favoring and interpretation of the social reality experienced, of the autonomy of people with mental disorders, as well as the meanings given by the actors to their supporting them in their socioeconomic, political lived experiences (GALHEIGO, 2003). and cultural needs, through diverse workshops, an​ In this sense, we investigate three guiding questions income generation project, among other activities associated with the occupational performance of offered. It aims to contribute to the reduction of stigma this people in the IADL: a) “if” and “how” they and enable the exercise of citizenship. The second perform them; b) difficulties of achievement and one is to promote quality of life, functionality and indicators of executive dysfunction; c) strategies social insertion, with a primary focus on combating used to overcome or compensate for difficulties. stigma, through programs of activities that aim at socioeconomic and cultural support, enhancing Six focal groups (two from each group) were opportunities for participation and social insertion. established in institutions that support users with The participants were allocated to three groups schizophrenia, one in Portugal and another in Brazil. to obtaining the data: people with schizophrenia, The two associations share the same principles of professionals, and relatives of people with schizophrenia. social and occupational reintegration, offering users The inclusion criterion common to all groups was and families activities aimed at reintegrating people the participation in an association of support for with experience of mental illness in the work and people with schizophrenia. social contexts. The following specific inclusion criteria were The sessions were recorded in audio and video listed: a) people with schizophrenia: diagnosis of from January to July 2015, and each focus group schizophrenia confirmed by a psychiatrist, ​be over lasted approximately 90 minutes, conducted under a 18 years old and be​ on ​steady ​use ​of medication pre-established guide, common to all groups. The guide for at least six months; b) relatives: be a first-degree was composed of five facilitative domains on the relative of a person with schizophrenia and over be theme: 1) opening (presentation and objectives); 18 years old; c) professionals: be a health professional 2) introduction to the topic (sensitization, daily or social worker with at least two years of experience activities and people with schizophrenia); 3) transition in the care of people with schizophrenia. to the topic (contextualization of the IADL); 4) key All users of the associations that met the inclusion issues (such as, why, difficulties), and 5) finalization. criteria were invited to join the study through telephone contact provided by the secretariats of the After performing each group, the data were associations, where the objectives and procedures of transcribed and analyzed through Interpretive the groups were exposed. Those who were interested Phenomenological Analysis (IPA), which provides in participating were called to join the groups at a for the following steps: several transcription date and time previously scheduled. readings, identification of initial themes, grouping, This study is part of the Ph.D. project of the and definition of the main themes. This method first author, held at the Faculty of and of analysis enables the understanding of subjective Educational Sciences of the University of Porto, and experience, as well as the and emotions supported by the opinion nº 673/2014 of the Ethics that ground the opinions on specific individuals in Committee of the School of Health Technology a descriptive and profound way (BIGGERSTAFF; of Porto and by the opinion nº 638.793 of the THOMPSON, 2008).

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 290 Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach

3 Results a reaction of the environment to the difficulties presented, and can be a support factor or barrier. There were 40 participants in the study. The specific sociodemographic characteristics of 4 Discussion each group - professionals, people with schizophrenia and family members - are described below, in Two aspects guided and systematized the discussion Tables 1, 2 and 3, respectively. of the results. The first aspect is the subjective The Interpretive Phenomenological Analysis (IPA) perspective applied in the study, with the analysis had three main themes disaggregated in their respective of the listening of the participants from three points subtopics and presented in Table 4. The subtopics of view - users, family and professionals -, which of the main themes “Do (not) it at their core” and led to adopt those inherent to culture in the which “Limitations” were related to the probable affected participants are inserted as reference standards for executive functions of the participants. The subtopics the performance of IADL - Brazil and Portugal -, of the theme “Environmental factors” emerge as mainly described in the discourse of family members and professionals. This option is based on the Table 1. Sociodemographic data of participants - conception of Vygotsky (REY, 1993), who declares professionals. that each person is the reflection of the totality of Portugal Brazil social relationships since all are embedded in forms (n=6) (n=6) of daily organization that are concretized in values, Profession social practices, modes of being as a characteristic of Occupational Therapist 3 2 a culture. The second aspect refers to the fact that Psychologist 3 2 there are no differences in the results presented by Social worker 0 2 the Portuguese and Brazilian participants, regarding Age [M (SD)] 31.5 (3.9) 52 (13.3) the types of difficulties in performing the IADL, as Academic Degree well as their facilitators and barriers, which allowed Doctorate degree 2 1 to discuss the set of results as a whole. Master 2 2 University graduate 2 3 The reports of the three groups reveal that the Years of experience 7.6 (4.4) 17 (9.2) occupational performance of people with schizophrenia [M(SD)] in the IADL is impaired when it comes to doing content and how to do it. The limitations between these themes/sub-themes are subtle, intertwined in Table 2. Sociodemographic data of the participants their causalities and consequences, and eventually - people with schizophrenia. suggest some overlap, such as lack of meaning and Portugal Brazil volition. However, they were very explicit in the (n=9) (n=7) Gender participants´ discourses that we have chosen to Male 7 4 approach each separately. Female 2 3 Age (years old) [M (SD)] 40.33 44.8 Table 3. Sociodemographic data of participants - (6.0) (12.6) relatives of people with schizophrenia. Educational level 12.3 11.5 Portugal Brasil (years) [M (SD)] (3.2) (2.8) (n=6) (n=6) Marital status Gender Single 9 5 Male 3 3 Married 0 1 Female 3 3 Divorced 0 1 Age 59.6 55.3 Widow 0 0 (years old) [M (SD)] (11.9) (19.2) Time of the disease 13.11 20.4 Educational level 11.8 (1.8) 12.1 (1.6) (years) [M (SD)] (9.4) (8.9) (years) [M (SD)] Live with Marital status Family 5 6 Single 0 1 Alone 3 1 Married 4 5 Institution 1 0 Widow 2 0

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 Macedo, M. et al. 291 Volition Volition Intentional action Intentional action LEZAK et al., 2004) ( Effective Performance Effective character: participant´s number. number. participant´s character: rd Related Executive Function Executive Related character: P = Portugal, B Brazil; 3 P character: nd Excerpts from the stories [...] there is always that impression you should not and do have to things by yourself... you have to be doing for others (UB3). [...] it does not care if the house is turned over (FB4). the kitchen and [...] but if you do not say these things (the need to organize but they are not, They seem lazy, the bedroom) you do not have great care... they can not even do things (FP3). [...]. My mother helps me in housekeeping... I do not have big aspirations to as I need (UP7). just as organized have a model home, but it’s There is a great distance between what right for them and the [...]. so they (family members) prefer that do not family requires minimally, even do it... (PP3).” [...] in her head she has no difficulty doing anything the house, but does everything very weak... (FB1). (FB2). [...] yes, he does all this, any of these activities, but has to order... [...] you have to always be giving this space, opportunity for my relatives to tell me what I have do, how do it as if were a puppet, we get little annoyed at it (UB3). They have to say what you do. (FP3). [...] [...] I live alone... there are times when is no will to take care of me... for example going shopping (UP2). [...] I know how to go, which bus take, but if did not plan it the day before, I did not think about everything in advance, do have the mood, will not go (UB2). lack of flexibility and The impression I have is that the problem rigor, [...] (FB2). adaptability. like that little doll you wind up, he walks straight, hit an obstacle [...]. It’s he gets there trying infinitely (FB1). [...] I said so many times, have already shown that it is wrong, and continues I have already seen that it is not purposeful... (FP3). to err, to err, character: U = user, P = professional, F = family member; 2 P U character: = user, st Sub-themes Dissatisfaction Lack of meaning Lack of autonomy Decrease in volition Inflexibility of thought and action essence Limitations Main Themes The doing (or not) in its The acronyms used to name each participant follow the next principle: 1 follow the next principle: The acronyms used to name each participant Example: FB3: Family Group, Brazil, participant 3. Table 4. Themes and sub-themes identified in IPA. Table

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 292 Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach LEZAK et al., 2004) ( Effective Performance Effective character: participant´s number. number. participant´s character: rd Related Executive Function Executive Related ganize character: P = Portugal, B Brazil; 3 P character: nd Excerpts from the stories [...] that is a complete disorganization, but she knows where things are, [...] that is a complete disorganization, all it’s she lives in that mess... the biggest problem is disorganization, at home. (FP4). disorganized [...] a great difficulty to deal with them is the planning, they can not or an activity (PP1). I do not take good care of the house, care, but as [...] I feel guilty... (UB1). wanted, well organized [...] my parents have to keep telling me do it, otherwise, I’m delay it (UB3). [...] I know how to do some things, but my mother prefers it (UP8). [...] many of them have their skills worked on, but families do not allow to homework (PP3). [...] the association was light at end of tunnel (UP3). (UB4). [...] I need to be encouraged, or else do not, here (Association) at least feel less different [...] she improved a lot after came here (FP1). excited about is coming in the association (FB3). [...] one thing he’s makes a lot of sense because they have so many deficits, And so the area of functionality IADL [...] training and that many times we do are much more complex tasks, which I think it requires differentiated not get them to have the result required. (PP4.) and then do not pass into real life... we have a training of [...] there are programs that more laboratory, did a preliminary study and we not find results with very significant We purchases in the computer... between the final and initial evaluation. (PP1). differences and that’s few years ago, I started working with cognitive therapy, A [...] Persistence and getting too close... every situation... (PB1) Working what works with them. [...]. But it takes a long time... in some cases we can not change certain behaviors, but they have learned to it was valued... (PB2) make coffee, character: U = user, P = professional, F = family member; 2 P U character: = user, st Family Sub-themes Professionals Health and Social Care Forums and Associations Difficulty in planning and organizing routines and tasks organizing Main Themes Environmental factors (facilitators and barriers) The acronyms used to name each participant follow the next principle: 1 follow the next principle: The acronyms used to name each participant Example: FB3: Family Group, Brazil, participant 3. Table 4. Continued... Table

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4.1 The Doing (or not) in its essence From this understanding, the results obtained reveal the dissatisfaction of the family members and The first theme highlights difficulties that professionals involved, since when the activities are characterize the functionality of people with carried out by people with schizophrenia, they are schizophrenia, through subjective elements about the not in the pattern expected/established/desired by sense of doing it or not doing it. When deepening them. However, contradictorily, for most participants into the analysis of the doing (or not) in its essence, with schizophrenia, the tasks are performed with we found subtopics related to lack of meaning, satisfaction, demonstrating a difficulty of self-monitoring dissatisfaction and lack of autonomy for action that in the execution of these activities. In this set of are also associated with other areas of occupational participants, we can deduce that the functionality performance of people with schizophrenia such as and perception of performance of people with work and leisure (MOTIZUKI; MARIOTTI, 2014). schizophrenia in the IADL are below expectations and do not correspond to the expectations of their 4.1.1 Lack of meaning relatives and professionals. Changes in performance may also generate overload for the caregivers, who In this subtheme, there is an apparent lack of often need to redo tasks as reported by family meaning for people with schizophrenia when performing participants. Thus, the meaning of the IADL for the IADL. Taking as a theoretical reference the the family and professional groups have a social Vygotskian perspective for understanding this topic, value relative to autonomy and independence and meaning refers to “what things mean.” The meaning are similar in both groups. However, for the group is related to the appropriation of the activity, involving of users, we suggest that meaning seem to be related “know-how”, “understanding” and the dynamics of to subjective values, linked to the low perception the relation between instruments‑actions-objectives of social values. (ZANELLA, 2004). Thus, from this conception, Nonetheless, we also identify another perspective we understand that, for these participants, the of dissatisfaction observed in the discourse of people performance of IADL seems to be “not very with schizophrenia when referring to the collection good” for people with schizophrenia, especially to imposed on the quality of the tasks. From their point understanding the objectives of the tasks required, of view, they expect their behavior/performance which, as a rule, precedes the action, that is, “I act to be accepted, but they are often perceived as according to what I wish to accomplish.” unsatisfactory. There is a space of divergence here that may be related to limitations in the ability to In the analysis of these reports, we realized that self-monitor and self-regulate the qualitative elements the doing dynamics of people with schizophrenia in the performance of the activity, as well as the low and their respective goals do not match the cultural tolerance and frustration, which is related to the standards expected in their countries. We emphasize effective performance component of the EF. Executive that the non-meaning of doing, apparently is not dysfunction can be seen in practical difficulties, as related to issue of not knowing how to do, but to well as in behavioral responses, such as motivational the non-meaning of “why” to perform the IADL lability, inhibition of response or even dealing with daily. Not doing activities that are expected and, tasks that vary in degree of relevance and priority above all, important in the daily lives of people (SABOYA et al., 2007). can lead to negative reactions and consequences, such as repeated complaints from family members. 4.1.3 Lack of autonomy The same behavior was observed in participants from Brazil and Portugal. The autonomy is related to the capacity for self-regulation when facing a situation. This quality 4.1.2 Dissatisfaction calls for the responsibility to act in the face of a decision made, that is, it requires consideration The subtheme dissatisfaction refers to the levels of several alternatives, the possibility of choosing of satisfaction and acceptance of the results of the right one and putting it into action (ZATTI, tasks performed by people with schizophrenia, by 2007). From this reference, the results in this group family members and professionals. We analyzed of participants show apathy towards the attitudes this discussion from the satisfaction parameters required daily. It seems that although there is referenced by the theory of discrepancy2, whose levels apparently the capacity to perform, from being are calculated based on the difference between the independent to action, people with schizophrenia expected result and the perception of the experience need to be oriented or even urged to perform daily (ESPERIDIÃO; TRAD, 2006). activities, which reveals the lack of autonomy, that

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 294 Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach is, the difficulty of make the decision and start 2007), and as one of the elements of executive the activity. The behavior of these individuals in dysfunction (NEILL; ROSSELL, 2013; the IADL seems to demonstrate the need to be ORELLANA; SLACHEVSKY, 2013), the lack of constantly guided, reflecting the lack of initiative volition was mentioned in the participants´ reports. for the daily demands. may also be a manifestation of the The performance of an objective that generates an lack of volition and may be related to a lower degree action - or the initiation, maintenance, modification of attention and long-term reward. This result may or even interruption of an activity - is correlated confirm what we have previously proposed about with the autonomy, the functional expression difficulties in occupational performance in IADL of the element of the EF, that is, the intentional not related to the lack of competence, but to be action. Thus, the lack of autonomy described in the an aspect associated with executive dysfunction discourse of these participants can be explained by (CAHN-WEINER; BOYLE; MALLOY, 2002; an executive dysfunction, namely in the subset of ORELLANA; SLACHEVSKY, 2013). intentional action (LEZAK et al., 2004; POWELL; VOELLER, 2004). 4.2.2 Inflexibility of thought One of the reported characteristics about the 4.2 Limitations attitude of people with schizophrenia is the behavioral The second main theme brings the three predominant perseveration in the accomplishment of tasks and in difficulties in the performance of IADL: decreased the confrontation of daily situations (FERREIRA volition, inflexibility of thought and action, and JUNIOR et al., 2010; MONTEIRO; LOUZÃ, difficulty in planning and organizing routines and 2007; ORELLANA; SLACHEVSKY, 2013). In this tasks, which, according to the EF reference proposed study, the reports that concretized this concept by Lezak et al. (2004), it allows to associate the are present, mostly, in the discourse of family and difficulties for the elements of executive dysfunction. professionals. There is a perceived intuition in these two groups that people with schizophrenia, although 4.2.1 Decrease in volition potentially empowered to perform everyday tasks, limited in their ability to overcome any unplanned Volition or will refers to the process by which demands. This is also described in issues such as people are motivated and choose what to do. time, place or materials, demonstrating a decrease The concept of volition admits that all human in mental flexibility. beings have the desire to engage in occupations The inflexibility or perseverance of thought and that this desire is continually shaped through and, consequently, actions and therefore the lack lived experiences, that is, how tasks are performed of volition, is related to executive dysfunction, as (FORSYTH; KIELHOFNER, 2011). The will already described, and also to limitations in the social refers to thoughts and feelings that occur in a cycle: and occupational performance of this population. thinking about the possibilities of what to do, choosing what to do, experiencing doing and then 4.2.3 Difficulty in planning and interpreting the experience. Unlike the motivation, organizing routines and tasks which has the direction of the environment for the individual (for example, a reward), the volition is Planning is an important step for the success intrinsic - from the individual to the environment in achieving a goal. Defined as the ability to think (for example, preferences, identity) and, therefore, about the future, it consists of choosing the most it can minimize obstacles found in the performance efficient strategies, determining the steps and as well as facilitating the initiation of actions organizing them in sequence to complete a successful and maximizing attention during the execution. task (SETER et al., 2011). The organization is an Considering the existence of a threshold of intention intrinsic condition, both for the planning and the for action, when desire is below that threshold, we execution of the activities. This is related to how can determine that it is the motivation that drives information is available or a system to achieve desired doing. Likewise, when desire crosses a threshold of results. The organization and planning are elements intention at a purely motivational level, it reaches of the EF and are directly related to the expected the volition (SHAH; GARDNER, 2008). occupational performance in the day-to-day tasks Described as one of the negative symptoms of (LAWS; PATEL; TYSON, 2008). schizophrenia (FERREIRA JUNIOR et al., 2010; The difficulty in planning activities may be one MONTEIRO; LOUZÃ, 2007; NAKANISHI et al., of the factors that explain the systematic supervision

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 Macedo, M. et al. 295 of the users, found in the reports of family members the social networks of individuals with schizophrenia, and professionals investigated. It has also been granting them a task that demands preparation observed that they perform the tasks in advance, to and dedication (CASAGRANDE; MARIOTTI; avoid disruptions and frustrations for both parties. CARDOSO, 2015; SANTOS; CAPOCCI, 2003). In order to systematize the findings in this Thus, this sub-theme demonstrates the adjustment discussion so far, Figure 1 shows the relationship of all the participants of the two countries to the between the listed difficulties and the presence of new models of rehabilitation advocated by the public executive dysfunction. policies of mental health in Brazil and Portugal, regarding the proposal of the family as a partner Thus, the results are similar to many in overcoming difficulties. It should be noted that, studies (HADAS‑LIDOR et al., 2001; in both countries, the Psychosocial Rehabilitation KLUWE‑SCHIAVON et al., 2013; LAWS; precepts are used as guiding principles for mental PATEL; TYSON, 2008; LIPSKAYA; JARUS; health care, called the Psychosocial Care Network KOTLER, 2011; SETER et al., 2011), regarding the relationship between EF and functionality, that (RAPS) in Brazil and the National Network is, problems in executive functioning directly affect of Continuing Integrated Care Mental Health the pattern of daily activities, as well as the quality (RNCCI-CCISM), in Portugal (BRASIL, 2011; of life and autonomy of people with schizophrenia PORTUGAL, 2011). (EVANS et al., 2004). Notably, the family members continually encourage users to be active and carry out day-to-day activities. 4.3 Environmental factors (facilitators However, contradictorily, sometimes they are also and barriers) agents of obstruction of the doing when they do not facilitate or do not guide the accomplishment of the The challenge of experiencing and coping with tasks. As an important part of the rehabilitation the difficulties faced by people with schizophrenia process, it was evidenced in this study that families was the third major theme emerging in this study, of people with schizophrenia should be integrated which demonstrates the strategies adopted by the into the treatment programs to guide them about users, the family members and the professionals in strategies that potentiate their capacities, as well as facing the obstacles found in the performance of provide optimize and resignify the doing of their IADL. Fundamentally, we found three resources limbs affected by the pathology. used, described below. 4.3.2 Share with peers - associations 4.3.1 Family - Stimulus and Obstacle The second sub-theme on environmental factors The substitution of the hospital-centered model (facilitators and barriers) is also closely associated by the Psychosocial Rehabilitation places the family with the psychiatric reform and the new equipment as a central support network in the reorganization of that emerged from it. The modality of coexistence

Figure 1. Relationship between the components of the executive functions and the difficulties reported in this study.

Cad. Bras. Ter. Ocup., São Carlos, v. 26, n. 2, p. 287-298, 2018 296 Schizophrenia, instrumental activities of daily living and executive functions: a qualitative multidimensional approach in associations was pointed out as an efficient Nevertheless, in this study, we did not find any device for the improvement of several aspects of actions that directly focused the rehabilitation of the life of the people with schizophrenia, namely the EF. On the other hand, in spite of transcending in the motivation for the daily doing. The social our objectives, we noticed that the Environmental support networks contribute to face the problems Factors to face difficulties evidenced are consonant experienced, providing support and protection to with the precepts of Psychosocial Rehabilitation, as the individual (BRUSAMARELLO et al., 2011; well as reveal that this population is inserted and FERRO et al., 2012). enjoying the available devices. However, we point For both users and their families, this space is out that the number of participants in this study is a limiting factor for the generalization of the results. reported as a place to alleviate stigma and strengthen potentialities. These social devices allow an egalitarian The reflection on the determinations of daily life experience, favoring the development or the rescue contributes to the movements of its re-signification. of capacities and abilities through different ways For people with schizophrenia, this is revealed in of doing, establishing it as an effective resource in the dynamics of self-determination in the face of the psychosocial rehabilitation of the people with the changes in their lives. Thus, in addition to schizophrenia. the naming and understanding obtained on the multidimensional factors involved in this research, we also sought to contribute with guiding elements 4.3.3 Health professionals and social for the construction of treatment and rehabilitation assistance programs, not only for skills and competences, Despite the differences in techniques used by but also to the more favorable contexts for its real the professionals participating in the two countries effectiveness. studied, the effect produced seems to be equivalent. Finally, the main contribution of this study In Portugal, professionals reported specific procedures was to identify the difficulties related to executive for the training of IADL in laboratory context, dysfunction and its impact on the daily lives of through simulation of activities in the Association´s people with schizophrenia, through the reports of premises, and in a real context, when the activities were the participants. This evidences the relevance of trained/carried out at home visits or in supermarket, specific rehabilitation programs for this population, shopping, etc. ., as well as techniques of approaches aiming at cognitive and functional improvements, for cognitive dysfunction through computational indicating that this area is to have its knowledge cognitive rehabilitation programs. deepened by new studies in new contexts, and also be a profitable area for the performance of the Otherwise, Brazilian professionals reported Occupational Therapist. that the treatment of occupational dysfunction is performed through cognitive therapy, family care, and skills training in a laboratory context. References No specific approaches have been reported for AMERICAN OCCUPATIONAL THERAPY ASSOCIATION cognitive deficits or for improving the occupational – AOTA. Estrutura da prática da terapia ocupacional: performance of IADL. domínio e processo. 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Authors’ Contribution Mônica Macedo contributed in the conception and design of the study, in the data collection, in the analysis and interpretation of the data, in the elaboration and writing of the article. António Marques and Cristina Queirós contributed to the analysis and interpretation of the data and the review of the article. Milton Carlos Mariotti contributed in the data collection, in the analysis and interpretation of the data, in the elaboration and writing of the article. All authors approved the final version of the text.

Funding Source Research Project funded by the Coordenação de Aperfeiçoamento de Pessoal de Ensino Superior – CAPES. Process BEX n.º 1703137.

Notes

1 Study approved by the opinion nº 673/2014 of the Ethics Committee of the Higher School of Health Technology of Porto and by the opinion nº 638.793 of the Ethics Committee of the Health Sector of the Federal University of Paraná. Work linked to the Ph.D. research project: “Rehabilitation of the executive functions of people with schizophrenia: proposal of a serious game contextualized in the instrumental activities of daily life” (FPCE -UP). 2 Discrepancy Theory: According to Williams (1994) the discrepancy model argues that satisfaction is entirely relative, defined in large part by the perceived discrepancy between patient expectations and real experience.

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